Social Construction of Alzheimer's

[jesse_the_k]

Do You Remember Me?
Free Press / Simon & Schuster, NY 2004
ISBN 074322230X

Judith Levine weaves social commentary and personal experience in elegant prose that kept me up late nights. An experienced journalist, Levine highlights the important and intriguing bits from the current literature of Alzheimer's Disease—scientific, personal, medical, political and practical. Her red-diaper heritage and feminist sensibility result in a searching inquiry. She reveals the economic imperatives driving the social construction of a disease entity that doesn't exist in some cultures. A refreshing counterweight to the "how I bravely bore the burden of caretaking" narratives, Levine has many reasons to loathe her father, but most of them evaporate as she learns to appreciate the "core personality" that remains when dementia strips away the substance of his interactions. Powerful and useful examination of the "should we put Dad in a nursing home?" struggle that millions of families face.

Disability Angle & Bonus Points The single best text I've seen on why age-related impairment belongs on the disability-rights radar, and disability issues belongs on the senior-rights agenda.

Relevant quotations beneath
from page 48

Dad's dulled reason is distancing him from his wife, but it is letting me come closer to him. His intellect was the bayonet with which he kept me at bay; I fought back with my own smartness. Now his weapon is blunt, and since he can't understand my barbs, they're useless too. We never really had a meeting of the minds. With one mind retreating, can we meet another way?

... I'm not measuring Dad's or our collective well-being solely in terms of the sense he is or is not making. I have a relationship with a person who can't have a rational conversation. And compared to what it was before, it's a good one.

from page 79

It would be hard to imagine life in contemporary America without colonies of "senior citizens" and nursing homes dividied into wards, this one for the well and ambulatory, that one for the frail or demented. After all, reason the institutions' administrators, each of these "populations" has its "special needs." But it wasn't always this way, and what we have now is not unmitigated progress.

Old Age was once simple the final stage of the journey. The aged lived amongst us all, ill or halt, helpful or inconvenient, respected and humiliated in different measures. But aging has changed. Age now is a medical condition, a compendium of disorders and dieases to be prevented, retarded, and cured. "Like other aspects of our biological and social existence," writes the historian Thomas R Cole, "aging has been brought under the dominion of scientific management, which is primarily interested in how we age"—biologically—"in order to explain and control the aging process." Increasingly, Cole says, gerontologists and social and biological scientists "view old age as an engineering problem to be solved or at least ameliorated."

from page 80

..."No one is sure whether AD is two or even three diseases, or even no disease at all." Critics of the disease designation of Alzheimer's point out that the "syndrome" is far from uniform among the people who are said to have it. The "stages" of decline outlined ... in 1980 don't always happen in the same order or for the same durations, if they happen at all. At the same time, some or all of the "definitive" markers of the disease ... can be found in most aged brains. ... [B]rain deterioration may or may not be accompanied by dementia.

from page 95

Dad is seventy-eight. I call.
"Hi Dad, it's Jude."
Pause while he collects an image of me.
"Jude!"
"Happy Birthday!"
"Ah yes, yes, and so it is." He tells me he went swimming this morning.
"Did you have a happy birthday?"
"Yes, we are all here, we are all here in this world, and we must help each other. And it's all there! And I daresay we are helping, we are helping one another." His wish that he and my mother would stop bickering seems to have transformed into an ongoing homily for world peace. "We are helping. And it couldn't be better. It couldn't be better."
"Glad to hear that, Dad," I say. I make one more try at segueing back to the birthday. "So, you had a good birthday. Did you get any presents?"
"Lil! Lil?" he calls out. "Did I get any presidents?" I hear her laughter from the next room, but there's no happiness in it.